Haemochromatosis Australia is a non-profit registered charity run entirely by volunteers. We are the support and advocacy group for people affected by haemochromatosis, their families and loved ones. We aim to provide support for people with the disorder and to increase awareness of haemochromatosis in the general public and the medical and health professions. We have been operating for over 20 years and continue to grow and expand our activities. We have been endorsed as a Deductible Gift Recipient by the Australian Taxation Office. Gifts of $2 or more are tax deductible in Australia.
No Australian will suffer harm from haemochromatosis.
As the primary advocacy group for Australians affected by haemochromatosis we will provide support and promote awareness, early diagnosis and research.
We believe that people with haemochromatosis are entitled to
• The same quality of life and life expectancy as other Australians
• Diagnosis before symptoms occur
• Well informed health and medical services
• Easy access to the knowledge, support and services they need.
1. Support people with haemochromatosis
We will provide support and up to date information to people with haemochromatosis and their families to assist them to manage their condition. We will provide opportunities to meet other individuals and families experiencing haemochromatosis.
2. Community Awareness
We will promote awareness in the community about haemochromatosis.
3. Professional awareness
We will raise awareness in medical health professionals in order to improve the rate of early diagnosis and treatment.
4. Health Policy Improvement
We will influence and advocate appropriate health policy relating to haemochromatosis.
We will support, encourage and maintain a high interest in research that will contribute towards our vision.
5. Administration and governance
We will operate efficiently and with high ethical standards while growing our membership and influence.
Strategic Plan 2015 – 2020
Haemochromatosis Australia’s Strategic Plan was developed to guide the activities of the organisation. it is reviewed periodically, with the next review due in August 2018. The management committee welcomes member feedback on the plan and your suggestions for future reviews. The plan for the 2015-2020 period can be downloaded here.
You can download a copy of the rules (Constitution) of Haemochromatosis Australia here.
Annual Report and Financial Statements
The Annual General Meeting of Haemochromatosis Australia for the 2017/2018 year was held at Newcastle NSW on 24 August 2018. Download a copy of the minutes here.
Dianne Prince, President of Haemochromatosis Australia tabled the annual report at the meeting. Download a copy of the report here.
Download a copy of the audited financial statements for the financial year ended 30 June 2018 here.
Joining Haemochromatosis Australia
By joining Haemochromatosis Australia you will join others with haemochromatosis helping us carry on our vital work. We will send you our Members’ Information Kit with a copy of our booklet Haemochromatosis Your Questions Answered, a Venesection Record Book and other information resources. Each quarter we will email or post to you our quarterly newsletter with helpful information and news about our members and activities. Knowledge is vital to managing your condition. It helps you understand the disorder and empowers you to talk with your doctor. Discovering you or a loved one has a strange and potentially dangerous genetic disorder can be confronting – even frightening. It is OK to feel some anger, pain, even grief. We are there to provide support and advice. Where possible we will organise local meetings and information sessions where you can meet others in the same position and share experiences and support. By joining us, you will also be helping us raise awareness of this condition and improve early diagnosis and treatment. Joining Haemochromatosis Australia costs $40 per year ($25 for concession card holders). Our group relies on membership subscriptions and donations to maintain our services and work towards our Vision.
You can make a tax-deductible gift to Haemochromatosis Australia to help us carry out our volunteer work online here, or download, print and post this form or or call our INFO LINE 1300 019 028 during business hours to donate using a credit card over the phone.
Our Management Committee
|Dianne Prince DBA MEd BA, President|
|Di became a Volunteer Advocate in September 2014 and was elected president in August 2016, bringing public and private sector management experience from the fields of education and business. Before retiring she worked for 20 years in the pharmaceutical industry in operations and supply chain management. Di was recently awarded a DBA for her research on Health Consumer Organisations. Di lives in Bundeena, a small community on the edge of the Royal National Park south of Sydney.|
|Desma Wieringa RN RM, Bachelor of Nursing, Vice-President|
|Desma has served on the management committee for several years. Desma has previous experience in managing and providing support in a Women’s Midlife Information Service in Tasmania for a period of four years. Desma is a retired nurse, midwife and nurse educator based in South Australia.|
|Tony Moorhead, Secretary>|
|Tony was appointed Secretary in 2010. He is a retired federal public servant with extensive experience in project management, marketing and communication, business analysis and organisation development. Tony is president of the Currimundi Catchment Care Group and a volunteer adult literacy tutor with Sunshine Coast Council literacy program. He lives in Currimundi, Queensland.
|James Stepehenson FRAIA, Treasurer|
|James is a practicing architect and business operator. He has been a committee member since 2010. Previously he has participated in Royal Australian Institute of Architect and local parish committees. He lives in Brisbane, Queensland|
|Dan Johnstone PhD, Committee member|
|Dan is a medical research scientist based at the University of Sydney. Dan’s PhD research focussed on iron overload, specifically the effects of haemochromatosis on molecular systems in the brain. He continues to work on research projects relating to haemochromatosis and the central nervous system (brain and retina) with collaborators in Newcastle, Western Australia and Brisbane. Dan joined the management committee at the 2013 AGM.|
|Liz McCray, BBus (Mgt), Committee member|
|Elizabeth joined the management committee of Haemochromatosis Australia at the 2017 AGM. Elizabeth was a volunteer advocate previously and assisted with publication of newsletters and the annual report. She has worked for various national and state based organisations in both administration and publications. Elizabeth currently lives in Brisbane having previously resided in Darwin and Newcastle.|
|Dr Barbara de Graaff, Committee member|
|Barbara is a postdoctoral research fellow in health economics at the Menzies Institute for Medical Research, University of Tasmania. Barbara completed her PhD in 2016 on the health economic aspects of hemochromatosis. This involved assessing the quality of life and health economic aspects of the condition, and developing a disease simulation model to assess the cost-effectiveness of introducing a genetic population screening program in Australia.
Barbara’s ongoing work focuses on a range of diseases affecting the liver, including viral hepatitis infections, non-alcoholic fatty liver diseases, and hepatocellular carcinoma. Other work Barbara is involved in includes: conducting the health economic and epidemiology projects for the Centre of Research Excellence- Pulmonary Fibrosis, assessing the value of government expenditure on pharmaceuticals and medical care, and working with collaborators in Vietnam to conduct research on viral hepatitis infections.
In addition, Barbara is a board member of the Australian Health Economics Society, a visiting scholar at the University of Melbourne and currently supervises five PhD students.
|Matthew Howie, Committee member|
|Diagnosed in 2007, as a result of arthritis of the hands, Matthew joined Haemochromatosis Australia in 2008. He has been a volunteer advocate in Adelaide since 2014 after attending the Melbourne Conference. Matthew is currently employed part-time as a relationship educator. Previous employment has included middle-level management in several Commonwealth Departments in SA and NT and more recently as a Family Mediator in an NGO. Matthew is also a Life Member of the Unley Apex Club.|
Margaret Rankin AM RN GradDipHthSc, Patron
Marg was appointed Patron in 2010. She was our founding president and retained that office for over 20 years until she stepped down in 2010. Marg remained an active member of the management committee until the 2013 AGM.. She is highly respected in haemochromatosis matters in Australia and overseas. Her contribution to haemochromatosis support was recognised with a Member of the Order of Australia (AM) medal in 2005. Marg also has extensive volunteering history with other not for profit groups, especially the RSPCA. Marg lives in Brisbane, Queensland.
Professor Emeritus Lawrie Powell AC
MD PhD FRACP FRCP (London)
Professor Powell is Emeritus Professor, UQ Centre for Clinical Research, The University of Queensland, Brisbane, Australia. Lawrie is a leading authority on liver disease and haemochromatosis. He is a medical advisor to Haemochromatosis Australia. Lawrie has been of immense support to Haemochromatosis Australia since it’s very early days.
GP Liaison Officer
Dr Katie Goot, MBBS BSc FACRRM
Katie is a rural GP based in Central Queensland. Katie became our volunteer GP Liaison Officer in 2011 before joining the management committee from 2013 – 2016. Katie helped develop the GP resources page for our website, developed an online training module for GPs and health professionals and has presented her research on HFE gene tests results in Queensland 2001 – 2011 at two medical conferences and a 2012 Queensland Institute of Medical Research Haemochromatosis Seminar.
Medical and Scientific Advisors
We have a panel of eminent researchers in the field of haemochromatosis to provide guidance and advice.
Professor Lawrie Powell AC
Emeritus Professor, UQ Centre for Clinical Research, The University of Queensland, Brisbane, QLD
Professor John Olynyk
Director of Gastroenterology, Fremantle Hospital, Fremantle WA
Professor Martin Delatycki
Director of Clinical Genetics, Austin Health, Director, Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute.Melbourne VIC
Professor Katie Allen
Director, Population Health, Genes and Environment Research Theme, Murdoch Childrens Research Institute, Melbourne VIC
Professor Darrell Crawford
Head and Mayne Professor, Discipline of Medicine, University of Queensland, Brisbane QLD
Professor Greg Anderson
Coordinator, Chronic Disorders Program, Head, Iron Metabolism Laboratory, QIMR Berghofer Medical Research Institute, Brisbane Qld.
Dr Katie Goot
Haemochromatosis Australia volunteer GP Liaison Officer and medical advisor.
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